Researchers and the Autistic Community in Partnership: a beginners guide

Transcription

1 Researchers and the Autistic Community in Partnership: a beginners guide Sue Fletcher-Watson Participatory Autism Research Workshop Munich, March 2018

2 Some definitions Autism community autistic people + allies varied perspectives Autistic community includes people self-identifying (?) intersectionality in this group Public Engagement: talking about research Science communication Knowledge transfer exchange Participatory research: doing research

3 Kinds of Participatory Research Consultation Collaboration Partnership Citizen Science Leadership

4 Societal Context Bigger picture Equality & Diversity agenda Disability rights movement #nothingaboutuswithoutus Participatory research / PPI History of Autism autistic leaders & scholars community organisations & events historic abuses and vulnerabilities

5 NT roles & the social model Double-Empathy Problem Thin-slice judgements by non-autistic people AQ scores depend on in-group / out-group status NT failure to correctly judge emotional responses reduced audience-effect in autism may explain false belief task performance patterns of data from in TD kids in minimal group paradigms (Chevallier, 2014; Edey et al., 2016; Gernsbacher et al, 2017; Milton, 2012; Sasson et al., 2017; Sheppard, 2016; Stagg et al., 2013)

6 Basics of Community Engagement Stage Nothing happening Writing a grant Starting a project Designing materials Data collection Analysis Dissemination Actions Make friends with some autistic people Join twitter Talk to your autistic friends Do an online survey about your RQs Cost for autistic consultancy & advisors Do you need an autistic person on your interview panel? Agree clear terms of reference & communication modes Review with autistic people + other relevant stakeholders Contrast, font, layout, language as well as content Be nice & ask for feedback (use the SPQR) Make the space comfortable (sensory review, posters) Best scientific practice is best autism practice Tell the people who took part, and thank them Be respectful: don t imagine you know your audience Share as creatively, widely and openly as you can

7 Family in Residence Goals Deep insight into family experiences PWC status in the community (via FX society) Improved participant experience & recruitment Activities Building a relationship: visits & tours Critiquing teaching materials Review of assessment measures / information materials Outputs Teaching (and research) materials Departmental lecture Long-term relationship; real science

8 Shaping Autism Research Activities Building relationships (long term) Autism-friendly seminars Equal status discussions Autistic co-hosts and speakers Outputs Journal article (something to cite) Handbook for ECRs: grow a new generation Video: social media hook Support for Participatory Autism Research Collective Infiltrating funders and research leadership

9 Mentoring Quarterly meetings Sharing all of the projects, all of the time Problem-solving together Building new ideas from scratch Not a consultant on any individual project

10 Key considerations Building personal relationships Planning & preparation Fair payment Transparency, honesty Willingness to change Trust Mutual Respect Listening & learning Principles of Engagement

11 FAQs Can one person represent a whole community? What about theory of mind? What if my research is with autistic people who don t speak? What if my research is lab-based? What if autistic people want me to do something I can t do? What if I can t afford a consultant? How can I avoid tokenism?

12 Thanks for listening! Any questions?

13 Resources #actuallyautistic #shapearuk #autisticsinacademia #askingautistics aaspire.org

14 Citations Chevallier, C., Parish-Morris, J., Tonge, N., Le, L., Miller, J., & Schultz, R. T. (2014). Susceptibility to the audience effect explains performance gap between children with and without autism in a theory of mind task. Journal of Experimental Psychology: General, 143(3), 972. Edey, R., Cook, J., Brewer, R., Johnson, M. H., Bird, G., & Press, C. (2016). Interaction takes two: Typical adults exhibit mindblindness towards those with autism spectrum disorder. Journal of abnormal psychology, 125(7), 879. Gernsbacher, M. A., Stevenson, J. L., & Dern, S. (2017). Specificity, contexts, and reference groups matter when assessing autistic traits. PloS one, 12(2), e Milton, D. E. (2012). On the ontological status of autism: the double empathy problem. Disability & Society, 27(6), Sasson, N. J., & Morrison, K. E. (2017). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific reports, 7, Sheppard, E., Pillai, D., Wong, G. T. L., Ropar, D., & Mitchell, P. (2016). How easy is it to read the minds of people with autism spectrum disorder?. Journal of autism and developmental disorders, 46(4), Stagg, S. D., Slavny, R., Hand, C., Cardoso, A., & Smith, P. (2014). Does facial expressivity count? How typically developing children respond initially to children with autism. Autism, 18(6),